No other child is as beautiful as your own, that's for sure. Epilepsy doesn't change that. But that doesn't stop comparisons being drawn between friends and classmates and this at times can lead to difficult realisations. Suzanne, Machteld, Krist, and Peggy share their story.
Jo is 11. Every morning, a small van picks Jo up to bring him and Pluk, his toy rabbit, to school. For the last five years Jo has been going to a special needs school, together with other children with additional needs. Every morning at 7:40 am, Jo waits for the van to sound its horn. That's the signal to grab his school bag, run out the door and quickly blow a kiss to his mum. Jo's mum, Suzanne, says: "it's nice to see how enthusiastic and positively Jo starts his day. But, when I then suddenly notice how Silke, our girl next door, leaves at the same time to wait for her friends and to cycle to school ... I still remember Jo and Silke playing together in the sandpit as toddlers. Back then, you didn't see any differences between the two. Today, Silke outpaces Jo. Fortunately, Jo does't really notice that or ask why he can't go to school by bike. But at times, reality can sting."
How do you, as a parent, deal with these difficult confrontations?
The comparison with peers is sometimes hard to digest for Machteld, Cora's mum, as well, "making friends remains difficult for Cora. She behaves differently than many other children." At school, Cora has some nice friends - but they live far away. Contact with children from the neighbourhood is more difficult, "her friends from kindergarten no longer recognise her. Yesterday a few of them came across Cora and me in the store. Cora waved at them, but none of them seemed to notice. - Why aren’t they waving back, Mum? - And there I was, not knowing what to say."
How do you react in these situations?
Last summer Simon turned 11. At kindergarten, he never experienced major problems. At that time, the difference between him and other children was by no means clearly visible. Indeed, Simon didn’t have to read or write yet and the sudden seizures were still "easy" to handle. But, the older Simon got, the more his intellectual deterioration was noticeable, and seizures became more severe. On a practical level, the seizures became more difficult to handle; imagine, a seizure in the middle of the city! To avoid these scenarios, Simon now uses a wheelchair, in the beginning, Simon found it difficult to go to school with it. This changed once he started in a school for children with additional needs. Since then, he can better understand and accept it,” his father, Krist tells us. "In Simon’s class, there are others with a wheelchair as well, so he feels less like the odd man out."
“In Simon's class, there are others with a wheelchair as well, so he feels less like the odd man out”
Kirst, Simon’s dad
Mum Peggy tries to protect her son, Bo, from painful or difficult situations. Bo has no learning problem, he's even pretty smart. Bo processes subject matter well and can work independently. Sometimes he reacts a bit more slowly, but Peggy has confidence in the fact that Bo’s friends and classmates understand that. They are patient with Bo. At the moment Peggy is not really worried about bullying, "I can ask the teachers for extra supervision and Bo doesn’t experience this as difficult for the time being, he fits in with the other children." But, will this continue when Bo starts secondary school? Do teenagers react differently? "The fact that you can't see absence seizures like you can a physical disability complicates things," Peggy continues. "What if Bo gets assistive tools in class? Will he struggle with the feeling of having to -justify- himself?"
How does your child deal with this?
How do you deal with contrasts like this? Is the realisation of the differences or challenges sometimes hard for you? Can you arm your child against it? Do you have a story Suzanne's, Machteld's, Krist's and Peggy's, or do you want to share another experience?
Whether you have -absence- epilepsy, or someone in your immediate environment does, perhaps a parent, sister or brother, best friend or neighbour, every story touching the topic of "living with" absence epilepsy, and every experience, small or large, can be incredibly recognisable to others. Please send us your stories, we'd love to read them! You can send us as much detail as you like, or leave your story anonymous if you'd prefer.
Thanks to the parents who shared their stories already and gave great meaning to this blog.
Why we do what we do
1 in 3 people with epilepsy suffer from uncontrollable seizures despite medication. We believe current digital technologies are able to create a massive impact on the daily life of people with epilepsy. At Epihunter we create digital solutions to make epilepsy matter less at moments that matter most. Our first solution is for people with silent, difficult to notice absence seizures.
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